Abstract [en]

The introduction of personal assistance in Sweden in 1994 showed an ambi­tion by policymakers to ameliorate the conditions of persons with extensive disabilities. The legislators expressed a vision of autonomy and integrity, and that persons with considerable disabilities should lead a life like others. This includes having a family and being a parent. The thesis “Family life with personal assistance” has aimed at exploring what it means to have an extensive disability and to have personal assistants in everyday family life. The thesis has had an explorative onset and is based on interviews with eight women and men and their family members: partners, children and members from the family of origin. They were interviewed about their experiences of daily life with personal assistance. The results are structured under three themes.

The first theme is about power - loss of power and control – loss of control in different situations in everyday life. The results indicate that the assistance users, in spite of a legislation that allows the user to choose how they want to form their personal assistance, are confronted with different dilemmas striving to maintain power and control over their everyday life and daily help. To cope with these challenges the assistance users had developed different strategies.

The second theme is about the results of applying a life course perspective on the different experiences depending on when in life the assistance users became disabled – if they were born with the impairment or if they had an accident or became ill as adults. These different experiences have had an effect on how they look upon personal assistance and it has also had an impact on how they formed their strategies about assistance and the assistant’s relations to their children.

The third theme is about the role of the family. Family members play a significant role in making everyday life work. In designing and using personal assistance, the individual’s freedom is balanced against his or her need of autonomy on one hand and the family’s demands for privacy on the other.